Settling in on Peritoneal Dyalysis

Manual Dialysis Exchange

I have been on overnight peritoneal dialysis for  four months now. That means I hook up to the cycler for about 9 hours every night, no more manual exchanges during the day.  It's better than manual exchanges, but it's still majorly inconvenient. I hate it, but I am appreciative that I am alive.

Some days/nights are better than others. Some nights I get very little sleep at all; the cycler alarms repeatedly go off "CHECK PATIENT LINE" and there is nothing I can find to adjust.  The tech support folks haven't always been able to solve it either.  Twice, under their direction, I have had to simply halt the dialysis for that

Automated Overnight Peritoneal Dialysus

evening. My nurse thinks its positional; I am experimenting with different ways to position the catheter and tubing, experiencing small improvements, and this pleases me.  Another alarm I repeatedly get: "LOW DRAIN VOLUME"- this one I am unsure about.  I have yet to figure out a direct connection between eating habits(like too much salt) and low drain volume.  Sometimes I do feel dehydrated though.

Its still a struggle to drink adequate amounts of fluid. (I have spent years limiting my liquid intake and it feels almost instinctive).  Same with protein intake…I have trained myself to avoid it and I even don't enjoy meat very much anymore.  My dietician keeps giving me ideas on how to increase my protein intake(eggs, peanut butter, etc) because my albumin level is too low. Overall, my lab work has been consistently good, and I am trying to take it all in and learn what each level is and how it affects me.  It's a big, never-ending balancing game to play.  I'm hoping I wont have to play it for too long. I have had a night where I discovered my transfer set disconnected from my catheter, a scary night, lots of antibiotics, but no infection, very glad.  Also, strangely, I have had a few days where the transfer set minicap simply comes off, causing more fear of infection, but everything thus far has been fine. This contamination has caused me to have to skip dialysis for a few evenings, until I could get a replacement transfer set.  All of these issues have reinforced to me that dialysis is a work-around, a temporary solution that needs to be monitored very closely, again, hopefully not for very long.

That being said, the next goal is transplant!  I've had my first introductory transplant appt.  According to the surgeon and case manager, I am a good candidate for both kidney and pancreas transplant; more good news. And…the case manager told me their average waiting period (once officially on the LIST) is about six months! I need to get some routine tests done, get cleared by a dentist and cleared by a cardiologist(because of previous heart attack).  Most of it seems straight forward, but I am most concerned about the dental clearance, my teeth will need plenty of work to be ready for the immuno-supresant drugs post-transplant. And I do not have dental insurance. Looking into community based programs provides hope but lots of waiting…been told there's a 3-4 month waiting period.  For once, maybe I can be glad to have ESRD…it might bump me up the wait list….might…I am going tomorrow to turn in documentation and plead my case.  Again, I am very hopeful and wont be deterred. Six months? Just a blip on the screen of my life.  Real life continues,  my daughter's in 8th grade and has started taking dance, my son is in preschool and I'm considering potty training, I am 37 and busy…I refuse to live like I am sick.